step one is complete
Friday, March 2, 2001 -- 9:02pm
Posted by Bar


Hello. Hello.

I am feeling better than I thought I would. Forrest is doing just
fine considering he underwent major belly trauma today. The surgeons
feel very good about what happened today. We have to do another
surgery on Monday to remove some packing they put behind his liver to
absorb excess oozing, but everyone agrees that it was a successful
day!! Forrest is connected to a million tubes, and he's bloated from
fluids, but otherwise, he looks great! This is only the first of many
more major steps to take, but my heart feels light and full.

They removed TWO orange size tumors from his liver as well as his
gall bladder. Because of the location and the destruction that the
tumor caused, his main artery from his liver to his heart was
destroyed. (We knew that going in to the surgery this morning.) His
little body has created other pathways for the blood which he has
depended on for many, many months presumably. The human body is a
remarkable machine, I think. Anyway, they removed 99% of the tumor,
and none of his liver. He has a peace-sign-looking incision from the
top of his chest down across the bottom of his ribs. The doctor
described it as a Mercedes Benz logo. It should look good on the
beach 20 years from now, eh??

They are still very concerned about the cancer and the tumors on
his lungs. We will still have chemo and radiation and probably more
surgery for the lung lesions, but for now I am feeling good and
relieved and totally in love with that little boy.

He is presently at the New York Presbyterian Hospital in the PICU.
He will spend the weekend there, go back to Sloan for surgery on
Monday, and then back to NYP for intensive care. It's convoluted,
but it's the way things work here when a baby needs intensive care.
He and I took an ambulance to NYP this afternoon. He would have
loved to be awake!!

My love to all of you and deepest thanks for your thoughts and
prayers these last few days. We have had a remarkable and very
moving week and feel very loved and surrounded -and protected,
too!!

More later,
Bar, Peter and Forrest

hello hello hello
Monday, March 5, 2001 -- 2:56pm
Posted by Bar


Let me first say that I am amazed at how fast I can
get on the internet when I'm in New York City and not
in rural, up-state New York. This is great!! Hopefully,
this time, my paragraphs will even be in place and you'll
be able to read my relief a bit more easily......

Forrest had his second surgery this morning and everything
went well. He's back in the intensive care unit at
New York Presbyterian Hospital. We are SO relieved to
have him finished with his surgeries and somewhere that
he can rest and recover from the trauma he has endured.
We are exhausted, but also full of wonder about how all
of this happened. He is still on the ventilator, and will
be through the week, so he is by no means out of the woods.
He's still in critical condition, but his vital signs are
better and better each hour. His heart has stopped beating
so hard (195-200 BPMS throughout the weekend!) He's down to
140 now - still fast, but manageable. His slight fever is
gone, his oxygen saturation ( the amount of Oxygen in his
blood is 100% and the amount of work the ventilator is doing
is being decreased as I write this.

The surgeon told us that his liver looks great - pink and
healthy. There's no more bleeding and all looks well inside
of him. I detected a delightful smile of pride in our very
humble surgeon this morning after the surgery. He's a
wonderful man. They drained ONE LITER of fluids from
Forrest's tummy this morning, so I'm sure the little man
is feeling better now. He is very bloated still, and puffy
(typical post operatively). He is starting to respond to my
voice now that the stronger paralysis meds are being decreased.
They basically paralyze him so that he won't damage his throat
with the ventilator tube down his chest. It's scary to have him
so far away when his body is very really on the planet. I miss
him terribly. Can't wait to hear his voice. I've been a mess
all morning - so tired and so fried emotionally. I cried to and
from the hospital although I managed to get it together when I
needed to.

So, thank you. Thank you. Thank you. I am forever grateful
for the support that you have all given us. We'll be here for
another few weeks, but we're safe and recovering and enjoying
the AMAZING staff at the NY Presbyterian Hospital. What an
awesome group they are!

Much love to you ALL
bar

Tuesday
Tuesday, March 6, 2001 -- 17:01pm
Posted by Bar


It's Tuesday morning and I've just re-read the 12 pages of e-mails
that we received via fax from Steve Stiert last night. So many of
you commented on what you observe to be my strength being able to
write you just on the heels of Forrest's surgery, and I can't
help but tell you that mine is not strength but necessity. You are
all completely involved in Forrest's life now. I am convinced that
your thoughts and prayers have given US strength and have effected
the miraculous unfoldings of his life. I can honestly tell you, and
with deepest gratitude I say this, that Forrest belongs to all of
us. His life (not to mention mine and Peter's) is forever changed
by the power of your support. My needing to connect with you all
was a joyful shout which I needed you to hear!! If it were
possible, I would give each and every one of you an enormous
bear hug!!!!

So, xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

Forrest is doing fine today. He's still on a ventilator, still in
la-la land, but his vital signs are good and his fluid retention
is slightly better. I've put a little stereo right next to his head
so he hears music instead of the non-stop sound of PICU's beeping
pumps. His two roommates are settled too, so it's relatively
peaceful here.

I love you ALL,
Bar

Forrest
Sunday, March 11, 2001 -- 13:08pm
Posted by Bar


Hi everybody,

Just a quick note before I get some sleep.

Forrest is doing fine. Still in the PICU, but stable. He got
off his ventilator on Friday which was very difficult. It
took 5 or so hours to get him comfortable. Fortunately, they
figured out what was wrong before they had to put the
ventilator back on. Instead, he's wearing a breathing mask
that feeds positive pressure to his lungs. His right
lung collapsed partially when he went off the ventilator.
This new device remedies that. Saturday, we removed the mask
for five hours and it was too much too soon, so we're now on
a strict two hours on, two hours off routine until his breathing
normalizes. He seems to understand that the mask gives him
relief, so he doesn't fight too much.

So, he's stable but he's still uncomfortable. I got him
out of bed this afternoon for an hour and held him in my lap.
He did not have the mask on during that time and his blood
went rich with oxygen the moment he was lying with me.
Tells you something about what he's withdrawing from, huh?
Poor little guy. He needs a lot of love. I can sleep with
him now. The staff has been very supportive of my lying
beside him through the night. I think that it does him a
world of good. It does me a world of good!

The great news is that most of the tubes are out of his body
as of this morning. YAY! He had nine in all. Now he only has
two and one of them is the semi-permanent port he has in his
chest.

Peter and I have not been as rested this weekend. Once
Forrest is truly breathing on his own we'll relax our vigil.
In the meantime, Peter's sister, Gray,
is around to feed us and to remind us when we HAVE to get
sleep. She's become our mom in other words.

I should go take a nap. I think about you all
a lot.

Hope all is well in your neck of the woods. More soon,
Bar, Peter and Forrest

update on Forrest
Thursday, March 15, 2001 -- 4:44pm
Posted by Bar


I just wrote a lengthy e-mail to you all, but this damn computer
lost it in transition.(or was it me??)  Maddening!!!

So, in haste, I write again to let you know that all is well.
We're at Sloan Kettering finally in a quiet and private room. Hopefully
home in a few days.

I'll write more when I have another moment, and hopefully this
message will arrive safely.

Much love,
Bar

Friday Night
Friday, March 16, 2001 -- 8:33pm
Posted by Bar


Hello again,

We're outta here in the morning. Hallelujah!! We will stay in NYC
for another couple of days so that we can see Forrest's surgeon on
Monday morning before we go home. We'll heaad home Monday afternoon.
It's hard to express how much I love the thought of home at this
moment. When I think of my own bed and actually sleeping through
the night without any pumps beeping or temperatures being
taken or meds delivered, I want to cry out with joy.

We spent a couple of hours in the enormous play room tonight making
St Patrick's Day cookies. Forrest had a great time smearing green
icing and green sprinkles over many a cookie. He finally ate a
little bit today. Still no interest in fluids, but I'm not worried.
He's so over wrought that I am quite sure he'll return to his
normal patterns in the next couple of days when we get outta here.

I hope that you will all sleep well tonight. I envy you. Tomorrow,
tomorrow, tomorrow. That's all I can think about.

Good night,
Bar

Home
Wednesday, March 21, 2001 -- 12:02pm
Posted by Bar


Hello everybody,I have wanted to write for days but haven't had the
strength to do anything but sleep when opportunities have come up.  We
are a mess.  It's great to be home,but our time in the hospital has
taken its toll.  Forrest is withdrawn and angry and scared and tired.
Peter and I are exhausted beyond anything we have ever experienced, and
we are all worried about what will happen next.  Wondering when it
will be better.  Extended time in the intensive care unit fried our
nervous systems.  Lack of contiguous sleep and so much stimulation at
every moment is terrible.  I don't know how hospitals can improve
themselves, but I think they should try.  In the intensive care unit,
they don't even turn down the lights at nightfall.  They clip along
24/7 as if there were no day and night...

It IS good to be home.  It's so quiet here and not being woken at
night for blood or for a temperature or for a blood pressure is
blissful.  We do wake up frequently anyway because Forrest is having
nightmares - and why wouldn't he?  He's been through a pretty awful
time.  They say that the drugs scramble his memory, but I don't
believe that a person forgets things on a certain level.  He may
forget the details, but I am quite sure he remembers his terror.
There's nothing for us to do for him except to constantly reassure
him.  Hard to do these days since we're needing the same thing
ourselves.....

So, here we are.  We are through with the worst of it....I
think.....But we are not done, and that's the part that is exhausting.
Forrest still has cancer and he still has lesions on his lungs that
need to go away.  Hepatoblastoma is aggressive and we need to continue
going after it now, particularly since the surgery was sosuccessful.
Monday we go to Albany for another round of chemo.  Depending on how
he responds, we will do another round 3 weeks later, and then, guess
what, more surgery!  Hard to stomach, I assure you.  The lung
surgeries (two different events - one for each lung), are considerably
less traumatic.  No ventilator is needed and they do NOT open his
chest.  They locate the lesions in advance and go in to specific
locations.  It's cake work compared to what he's experienced this last
couple of weeks.  Needless to say, I can hardly bear the thought.
More than ever I am needing to take one day at a time.  More than ever
I am needing to have faith and patience.  I do feel tested at the
moment.

So much kindness has come our way, and I hope you don't mind if I do a
bulk "Thank you" in this e-mail.  When I think of the list of thank
you notes that I would love to write, I start to shake with anxiety
and longing for the time totouch base with each of you personally.
It's just not possible.  I hope that you understand.  We have been so
blessed by your thoughtfulness.  So many presents!!  We've been given
dream-catchers, books, crayons, animals galore, jewelry (for me!
Thank you!!!)  hand-made cards from children we've never met, cars,
magnets, games, videos, matching pajamas for the three of us (great
idea!!), phone cards (much needed), CDs, prisms, stones, Girl Scout
cookies, home-made cookies, photos, puzzles, all sorts of toys.......I
could hardly pack the car when we left Ronald McDonald's on Monday.
And as much as this sounds corny, Forrest is broughtto life with each
present.  It's new.  It's exciting.  It's mysterious.  He knows
exactly who has given him everything that he's been given and nothing
is brushed aside.  It's rather remarkable especially given my rather
nasty temprament as a child.  I was terribly rude if a gift was not
exactly what I'd had in mind.  I learn so much from him.  He's very
kind and very grateful.

We feel so well cared for.  My friend Liza, called to see if she could
bring us dinner tonight.  I was so grateful that I wanted to cry right
there on the phone. Receiving is so hard and so humbling.  I thank God
for so much in every moment. Forrest is alive and recovering and the
worst hurdle is hopefully crossed.  He's thin, but he's eating well.
He's not walking because he's so weak, but everyday he shows signs of
strength.  I love you all for being there for us.  We are so glad for
it.

Much love,Bar

Good Morning
Saturday, March 24, 2001 -- 10:35am
Posted by Bar


It's Saturday morning and we are considerably better balanced than we
were the last time I wrote.  Spring has arrived, it's a
beautiful morning, and Forrest is happily watching Elmo videos in the
living room.  Granny is here, my mom, and she has rescued us from the
worst of our stress.  All three of us are much, much better.

Forrest and Peter went to school on Thursday morning.  What a victory!
Forrest managed to stay for nearly the whole time save 15 minutes or
so at the end when he finally pooped out.  Peter reports that he was
quiet, but also very mobil:  walked all over the place with support
and investigated all of his favorite corners.  He absolutely lightsup
when he arrives there.  He has attended the same school for two years
now.  We call it school, but it's not really school.  It's a
structured and fun play group.  Parents go too, and the same group of
kids go for the 3 or 4 years preceding Kindergarten.  Gradually the
parents leave as the children are comfortable.  The theory is that
children need and want lots of safety.  By knowing all of the children
in the class very well, and by knowing their parents very well too,
the children don't experience the jolt of abandonment that often
accompanies going to school.  It's very civilized, and, we recognize,
very privledged.  We are lucky to have a place like it right around
the corner.  Forrest's teacher, Cheryl, and I agree that his having a
place at school and his going there when possible, is very important
to his healing process.  You wouldn't know that he has so much as a
cold when he goes there.  Ironically, last year Forrest was the only
one not to miss one day of school.  The picture of health.  Little did
we know.

Today is a big day because Forrest's best pal, Lucia, is having
herthird birthday party and we are going!  YAY!  Forrest made her a
necklace and put glitter all over it.  It's a masterpiece like so many
art projects of the young are!  (If you're reading this e-mail, Lucia,
act surprised, ok?!).  Anyway, we are excited to go and see more of
Forrest's buddies who inspire us tremendously.  We have been talking
about CiCi's birthday for a couple of weeks now.  All through his
recovery we would whisper in his ear that he needed to rest so that he
would be strong enough to get to her party.

We're off to Albany for 4 days of chemo on Monday morning.  If you
want me to be specific about what we need you to pray for, whydon't
you ask for this chemo to blast the rest of hepatoblastoma from
Forrest's system!  We need those lung lesions to disappear.  Truly.
They need to hit the road!  Lots of learning going on here.  Patience.
Faith.  Joy.  Terror and resolve.  Zen.  God.  Life and Love.  R
eading Lance Armstrong's booknow and reflecting on a comment a cancer
survivor said to him:"you won't understand this now, but we are the
lucky ones".  And I believe this to be true as demanding and difficult
as this is.  Odd isn't it!

Much love,Bar

Albany
Monday, March 26, 2001 -- 6:32pm
Posted by Bar


It's great to be back here despite the circumstances. As much as
we loved being in New York City, we are glad to see old friends
here at Albany Medical.

When we arrived at clinic this morning to sign-in, we received
an enthusiastic round of applause from the staff. Quite different
from the more subdued mood we left here six weeks ago when Forrest's
prognosis was far worse. We checked into our room and
started chemo about an hour ago. Funny that when we started doing
chemo eight months ago, there was no way that I would duck out for
a bite to eat while Forrest lay there being chemo-ized. Now, we're
such veterans that I go for dinner if it's dinner time, and
regardless of the time or the drug being administered, Forrest
is in the playroom pretending to make chicken soup (complete
with celery, ice cream, bananas and potato chips! Yummy!) He loves
to "cook" and spends most of his time at school and here at the
the hospital making delicacies like hamburgers with syrup and the
aforementioned soup.

When you see someone everyday, they look about the same to you
despite their little changes. Since we haven't been here for
about six weeks, we are surprized to hear what people think
about how Forrest looks, and it's good to hear. Apparently he
looks better than he ever has. Lots of the staff is
stopping in to say hello and see
for themselves. It's VERY positive for us. We have been so
devestated by all that he has had to endure, that we forget that he
is MUCH better now. In particular, we ran into Melissa who is a
young woman who volunteers at the Ronald McDonald House and who
Forrest especially loves. He was delighted to see her and sat and
read with her for a little while in the lounge. Good stuff! Thank
you, Melissa. You're an angel.

So, chemo runs through Thursday early morning. Hopefully, hopefully,
he will respond positively to this round and we will be able to move
forward quickly. But we learn over and over to take one day at a time
and to roll with the punches.

On a professional note, I did a little benefit concert last night
in Woodstock. What a thrill! I haven't played in public for four
months now and I was really happy doing it. I hope that there is
more of that in my future. I do have another short performance on
Saturday night, also in Woodstock, which I look forward to. Nice
to get back to singing for people. It feels different now. Not as
threatening and much more meaningful and purposeful. I am glad for
that. We musicians tend to put ourselves through awful paces in
order to get ourselves on stage. It was much easier and more
enjoyable for me last night. Nothing important to lose anymore.....

I am happy and hopeful. Life is good and full. Be well and take good
care of yourselves. With love,

Bar

Chemicals
Wednesday, March 28, 2001 -- 10:25am
Posted by Bar


I am feeling needy this morning, so I thought I'd scribble you an
e-mail while I wait for our sheets to dry here at Ronald McDonald's
House.......the custom is to leave things as you found them here:
beds clean and made, room vacuumed and towels put away....it's very
civilized.  Which reminds me, I can assure you that all of those
pennies, nickels, dimes and quarters that you have casually thrown
into the Ronald McDonald House Charities' pots at your local
McDonald's, was money well-spent.  This place is an emotional
life-saver.  I can not say enough about it.....

So, you guessed it.  We're going home today a little ahead of
schedule.  Hallelujah #8674840684!  I have not had a good time this
time around.  I am scared of all of this chemo going into Forrest.
He's being hit hard with a very powerful drug called Adriamycin.  It's
one of the nastier ones in the chemo family.  It's his fifth round of
this particular drug (out of 10 total rounds).  Many kids cannot
tolerate it.  He can, but he may soon pay for that.  When we were in
the intensive care unit recovering from surgery, the negative effects
of all of this chemo were apparant.  He did not recover as quickly as
some kids would and it was clear that his heart was working very hard.
That's because of the adriamycin.  We are definitely getting into high
toxicity doses and it's enough to make this mommy crazy.  On the one
hand, you want to give the drug because it is powerful enough to
destroy the cancer (hopefully); on the other hand it is also powerful
enough to destroy Forrest.  You watch it drip in over 10 hours, twice
in two days, and you just have to wonder and be fearful and hopeful
all at the same time.  I have had trouble focusing on anything else.
In between the two doses of Adria, he gets an equally nasty chemo drug
called Cisplatin.  The combination is awful.  All kinds of scary side
effects could start to appear....  it's terrifying to choose to do
this to Forrest.....or should I say 'for Forrest??.....

These two drugs run down Forrest's white cell count dramatically.
Because infection is the biggest threat at this stage, and because a
person needs white cells to fight infection, re-building his white
cell count is very important.  So.....we will go home on neupegen
which does just that.  It's an uncomfortable drug for Forrest to take.
It makes him achey and a little uncomfortable.  We'll give it to him
IV everyday and hope it's not too bad.  If all goes well, his white
cell count will have returned to a healthy level in about 10 days.

He woke up this morning happy and strong after a 12 hour sleep.  He
was hungry and excited about watching Blue's Clues again after
watching it 273 times yesterday.  These are all good signs and I was
delighted to see him so happy.  Yesterday was not so good.  But we'll
be home in our own bed in about 8 hours and I am very glad for that.

You've learned more than you probably wanted to know about chemo
chemicals, but I had to get it off my chest.  I've been worrying more
than usual the last couple of days.

Thank you for being out there in www land! I love you all,
Bar